Cluster headaches strike out of nowhere with incapacitating pain, but sufferers find some comfort from various treatments and online community.

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Chris Hannah was in a movie theater watching Harry Potter and the Half-Blood Prince when a sharp, grinding pain suddenly gripped the left side of his head, a deep pain struck behind his eye, and he felt as though a vice was squeezing the top of his head.

Hannah thought he was having an aneurysm. His wife and daughter drove him to the emergency room. “It felt like my head was going to explode,” the 50-year-old says three years later. Hannah would spend eight months intensely searching for a diagnosis, trying various pain medications, and undergoing unnecessary surgery for a deviated septum.

"It felt like the headache you get from eating ice cream too fast, but times 20, and at the same time like someone is stabbing you in the head and pulling out your teeth," he says. Leininger, 42, vividly remembers pulling off the road and crying from the extreme pain. As soon as it passed, he drove straight to the emergency room. Leininger didn’t get an accurate diagnosis until three years of headaches passed.

Hannah and Leininger are among an estimated 500,000 Americans who suffer from cluster headaches, which affect more men than women. In contrast, migraine headaches — which produce a severe, throbbing pain often accompanied by nausea, dizziness, sensitivity to light and sound, and visual disturbances — typically impact women.

What Causes Cluster Headaches?

Cluster headaches seemingly come out of nowhere and cause excruciating pain and agitation. The pain favors one side, affecting the eye and surrounding area. Doctors aren't sure why they occur, or why they happen in clusters lasting from days to months, but say they suspect an irregularity in the brain's hypothalamus.

"It's the clock of the brain responsible for day-and-night cycles, hunger, and sexual behavior, and it's the master regulator of the body,” says Stephen Silberstein, MD, Director of the Jefferson Headache Center at Thomas Jefferson University in Philadelphia, where both Hannah and Leininger are treated.

Dr. Silberstein says that patients who suffer from cluster headaches tend to have larger hypothalami and often experience their headaches the same seasons every year.

Hannah’s cluster headaches occur every day. The taste or smell of red wine, cured meats and other foods with nitrates can trigger his attacks. Even watching the action of a fierce Quidditch match on the big screen in a Harry Potter movie can trigger an attack.

Leininger’s attacks are episodic. He can be pain-free for months before they hit with a vengeance, lasting days, weeks, or even months. He believes his headaches occur after stress, though research does not indicate that stress is a trigger. Research does show that some cluster headache sufferers are not vulnerable to triggers like alcohol and cigarettes until they are already in a cluster headache cycle. But some sufferers report the following can trigger a cycle as well as provoke an attack:

Drinking alcohol.

Sleep problems. It’s best if you go to bed and wake up at the same time every day. Don't take naps.

Increases in body temperature. This can happen when you exercise, take a hot bath, or get angry.

Nitrates found in wine, cured meats, aged cheeses, and some medicines.

Histamine. Seasonal allergies could trigger a headache.

Leininger, who is self-employed and struggles with debt, can work only intermittently when he is in a headache attack cycle. "When you have a headache you definitely shouldn’t be behind a wheel or even on a bicycle," he says.

Hannah was a senior director for a pharmaceutical company until two years ago, when he went on permanent disability because of his chronic attacks. “So many people with chronic cluster headaches go through a process of having difficulty at work, having attendance issues, having performance issues, because they’re struggling through this thing that nobody really understands,” says Hannah.

Treatments Include Numerous Injections

Leininger tried multiple medications and treatments to prevent his headaches, but initially had little success. He found Imitrex, which narrows blood vessels around the brain and can be taken orally or by injection, the most helpful at stopping his pain. Unfortunately, doctors don't recommend Imitrex to treat each attack because of the medication's adverse side effects, including seizure, severe stomach pain, and fainting. Imitrex may elevate blood pressure and may put patients with heart disease at risk for a heart attack. And Imitrex is not covered by most insurance companies more than nine times a month. Leininger has no health insurance and pays about $90 per shot. He has used as many as 40 shots per month in his worst cycle, but worries about the cost and the side effects, especially because he has a family history of heart disease.

Hannah also worries about the long-term use of Imitrex, but he relies on the injections an average of four times per week.

Inhaling 100 percent oxygen through a mask is a less invasive and less expensive treatment for acute cluster attacks, though patients find it difficult to carry an oxygen tank, and oxygen is highly flammable. Leininger says oxygen only takes the edge off his pain, if he catches the headache before it is full-blown. Hannah finds it can sometimes prevent an attack if he catches it early, or at least lessen the severity.

Corticosteroids, lithium, and anti-seizure drugs are medications that may prevent cluster headaches. Leininger recently started a new combination of medications including Verapamil, a calcium channel blocker that relaxes the muscles of your heart and blood vessels. Dr. Silberstein says that it can turn off cluster headaches, but experts aren't sure why. Leininger and Hannah both take lithium. Typically used for bipolar disorder, it can turn off cluster headaches, too. Dr. Silberstein says getting the right combination of drugs and doses is particularly challenging with cluster patients.

Leininger has also learned to detect signs that a cluster headache is coming on.

“A feeling of warm air goes up my left side, and my left nostril and eye tingle about 10 minutes before the attack.” Many patients have similar warnings, including itchiness or tearing in the eye, a clogged nose, and restlessness.

Struggling with an average of four attacks per day, Hannah finally resorted to a surgical procedure called occipital nerve stimulation in 2011. A small device was implanted at the base of his skull to send electrical impulses to the nerve and quiet the pain in his head. The device has reduced his daily attacks to one to two a day.

Electrodes May Help Cluster Headache Sufferers

Dr. Silberstein hopes a new treatment known as sphenopalatine ganglion stimulation may help Leininger, Hannah and other patients with severe cluster headaches. The procedure, which has been studied in Europe in small trials, electrically stimulates a large cluster of nerves that sit behind the nose and are believed to play a significant role in turning off cluster headache pain, though doctors are still unclear why. The procedure requires embedding an electrode deep within the cheek and near the nose. Each time a patient experiences pain, a remote control stimulates the electrode and shuts down the pain, explains Dr. Silberstein. He awaits FDA approval, which could take up to a year, to start a multicenter trial at Jefferson.

Finding Support From A Community

Hannah created clusterheadacheinfo.org and its Facebook support group to share the latest medical information on cluster headaches and create an international support group that he estimates totals nearly 40,000. The group shares their most intimate thoughts about struggling with the illness, how it affects their families, and even thoughts of suicide. Hannah has intervened in a few suicide attempts, including one man whose life he saved. “He had left a message on our board to the effect that ‘I can’t do this anymore’ and I picked up on that and I found his town through the internet,” says Hannah who reached out to the town’s local deputy. They found the man in time though he had overdosed and was unconscious. Hannah and the man are now close friends.

“It takes everything away from you. I think it’s not so much the pain, although I think the pain is horrendous, but the inability to concentrate to maintain an activity beyond, say 20 minutes, those are things that really steal from you the ability to do things day to day,” says Hannah who has also had suicidal thoughts. But he always comes back to thoughts of his wife and two daughters.

“Cluster headaches are not a disease of just the sufferer. They’re a disease that affects the family,” says Betsy Halsey, Hannah’s wife. Though she can’t chase away his pain, she tries to make a difference through the little things like bringing him water, rubbing his neck and back, and creating a safe, and quiet space. “I don’t know if those are things that really help him or if it’s a routine and that routine is comforting,” she says.

"The light touch on the side of my head is comforting when I'm coming out of an attack and when my head is sore. But knowing she's there and having her touch me also calms me," says Hannah.

“There is definitely a way to live; it can be positive,” says Hannah. "There’s always room to have that down time and that pity party but at a certain point that’s not fun anymore and you have to really think about what you can do, “ Hannah adds.

Leininger is also trying to manage the anger and depression his pain provokes and focus on the times when he’s feeling well. “I’ve had some counseling. It makes you angry when you can’t control the pain, but it also makes you appreciate every day. When I feel good I live my life as best as I can.”

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